The Hummingbirds' Foundation for M.E. (HFME) is fighting for the recognition of M.E.,
and for patients to be accorded the same basic human rights as those with similar
disabling and potentially fatal neurological diseases such as M.S.

A memorial for Gurli Bagnall

Margaret Williams writes: It is with great sadness that the death of Gurli Bagnall is announced. She died just before 1pm today, English time. (August 17th 2011). Born in Denmark, she spent much of her life in New Zealand and was a ceaseless campaigner on behalf of people with ME. She was much loved and respected, and will be greatly missed. She was indeed the bravest of the brave.

Gurli Bagnall was a tireless campaigner for M.E. patients, non-M.E. patients misdiagnosed as 'CFS' and patients that had been harmed by 'benzo' drugs. She was also a talented writer, novelist and jewellery designer. She will be much missed by her family and also by many of those patients and fellow advocates that she was in contact with and whose lives she touched.

To submit a comment to this memorial for Gurli, please fill in the form on the Guestbook page. Thank you.

'For many years my mother couldn't tolerate plants in close proximity because they caused her breathing problems. She suffered for years from ME and the associated horrors that accompany that disease. As a result we tended not to have around us things that smelled too much because we lived on each others' doorsteps and I didn't want to cause her any more discomfort than she already had.'

Gurli was fiesty, and passionate, and pushed for the truth, and didn't back down. I admired that about her. At least we know she isn't suffering through day after incredibly challenging day anymore. May she rest in peace now.

M.E. advocate LK Woodruff, USA

I don't know what to say, but am so sad about Gurli Bagnall, though at least she's free now. I hope she knows how she's appreciated and how important she's been.

M.E. patient Kate, Spain

All of us in the worldwide M.E. community owe a debt of gratitude to Gurli Bagnall for her efforts on our behalf. Thoughts and prayers to her family; she will be sadly missed by many.

Carol, UK

I still don't know what to say about Gurli. There is so much to say and I still feel unable to write a her a memorial that does her justice.

Gurli was someone that I found inspiring. I met her 5 or 6 years ago through her M.E. activism writings. I suspect I wrote to her to thank her for her work and we started talking from there. It wasn't until we had been talking for maybe a year or so that one day Gurli casually mentioned in an email that she was in her 70s. My memory is poor thanks to M.E. but I remember clearly that I stopped reading her email at that point, as I was just too shocked to continue. It took me a few days to get my head around the fact that someone so cutting-edge and open minded in the way she thought and wrote was someone older, as (I don't know if this is ageist!) this seemed to be a hard enough thing for many middle aged people to manage in my experience, let alone those a little bit older than that. I had just assumed that she was probably in her 40s or 50s. Gurli's writings are impressive regardless of her age but I must admit, knowing her age made her an inspiration to me even more so and really changed the way I thought about what being in your 70s meant.

Gurli's writings were of a high quality. I always admired how she was able to blend together information on M.E. with other more well-known issues in the media in such an intelligent and convincing way. Gurli also wrote very well about why M.E. and 'CFS' are not the same and why the concept of 'ME/CFS' is so problematic. I often cheered to myself after reading Gurli's latest essay and it is hard to accept that no more will be coming now.

What Gurli did was inspiring (her writings), but so was just who she was and the type of person she was, especially considering how much pain, suffering and medical mistreatment she unfortunately had to cope with.

Gurli was also a talented jewellery designer and had written a novel and a short memoir. I will always keep those 2 books and the pretty flower brooch and think of Gurli when I see them.

Gurli was also a very kind and compassionate person when it came to talking to her fellow M.E. patients in a support/chat group setting, and generously shared a lot of her wisdom with others too.

Gurli, you were such a special person in so many ways. I am glad that your enormous suffering is at last ended though, and grateful that I was able to know you. You will be missed.

Jodi Bassett, Australia

Thank you so much, Gurli. As the years go by, and we see doctors continue to slander ME patients and abuse them and their families, it gets tough to carry on. Your work on behalf of us all is deeply appreciated, and you will be sorely missed.

Anita, USA

‘Dr. Manu's note that preceded his CV and explained his views on ME, left me wondering what qualified him to pass an opinion at all. Not that he actually referred to ME. He prefers the title, chronic fatigue syndrome ( CFS) - a condition, concocted by self-serving members of his profession and a condition which bears no resemblance to Myalgic Encephalomyelitis (ME). This issue is not about a concocted disorder, the definition of which is determined by conflicts of interest and nothing else. It is about a scientifically proven, and a WHO accepted physical disease that is both life-destroying and life-taking.’ Gurli Bagnall, M.E. advocate

'At one time, sick people recuperated or convalesced. Now according to a group of megalomaniacal brain-washers and self-elected "law-makers", they are expected to rehabilitate along with murderers, rapists and thieves. The law which states that a person can only be sectioned if he is a danger to himself and/or others, has been swept aside by the above mentioned self-serving monsters masquerading as doctors. Many will dismiss this as fanciful rubbish. After all, we live in civilized societies where such things could never happen. Unfortunately, they can and they do. It happened to the recently deceased [M.E. patient] Sophia Mirza.' Gurli Bagnall, M.E. advocate

Articles by Gurli Bagnall

Gurli Bagnall is a M.E. sufferer and activist from New Zealand, she has written many articles and essays on the topic of M.E. (and related issues) including a novel based on her personal experiences entitled 'With Criminal Intent' (formerly entitled 'The Bounty Hunters').

'As human beings we have the tendency to hide our heads in the sand when something unpleasant looms on the horizon. Nowhere is that more true than in the medical field and for those who think it will never happen to them, it is time to wake up and pay attention to what is happening to others before it is too late.

There was a time when we rarely heard of adverse consequences to medical treatments, but with the introduction of the internet, the reporting of medical scandals has increased to the point of being a daily event.

The latest to come to light here in New Zealand, was the subject of this week's TV documentary, "60 Minutes". It told the story of a 56 year old farmer who had been diagnosed with swine flu. He was extremely ill and the hospital informed the family that the life support that had kept him alive for three weeks, was to be disconnected. There did not appear to have been any discussion; it was simply a bald statement of intent.

To add to the family's woes, was the discovery that during the three weeks on life support, the patient had developed leukaemia.

As a last effort to salvage the situation, the family asked that before disconnecting life support, the doctors administer high doses of Vitamin C intravenously but the request was rejected outright. When asked what harm it would do since the doctors intended to remove life support anyway, they reluctantly agreed to give it a try.

The lung xrays had been "misted" to the point where no details of their structure could be seen. Two days after commencing the high doses of Vitamin C, the lungs were clear. Not only that, but there was now no sign of the leukaemia.

One would expect that members of the healing profession would be ecstatic about the results and their international implications. Instead this body of people whose business is health and fighting disease, gave every indication of displeasure and that it would have suited them far better if their patient had die.

The family kept a vigil and documented everything. To their dismay, they found he was once more deteriorating and on investigation, were amazed and angry to discover that when the dramatic improvement became apparent, the doctors stopped the Vitamin C.

To cut a long story short, the family called in the legal heavy-weights and the hospital felt it prudent to recommence Vitamin C and slowly the patient started once again to recover - slowly, because the doctors were still flexing their muscles and abusing their powers by refusing to reinstate the initial high dosage.

Should there have been a criminal prosecution? If there had been no doctor involvement, would the perpetrators face some sort of charge? Attempted murder perhaps? There is a sinister aspect to cases like this which make parents who withhold life-saving treatment from a child on religious grounds a negligible offence by comparison. '

" BILL REEVES Reeves compared his ruptured quadriceps tendon to ME - or CFS as he chooses to call it. The point he was trying to make in claiming to have found CBT useful as he struggled to get about on a crutch is not clear. Perhaps the message meant, if it was good enough for him, it should be more than good enough for a bunch of lay-abouts and people who only imagine they are ill. The point that he neglected to mention, is that, first and foremost, without argument or even question, Reeves' physical injury was treated appropriately. Had this not been so, instead of boasting about his “cleverness", he would either have kept quiet or created an uproar. If, after the appropriate treatment he still needed a shoulder to cry on in the form of CBT, that was his business and personally I couldn't care less. In fact it leaves one almost speechless to think that he, as a doctor, ".did not understand what was happening, how to cope with it and what to expect." In the UK, an ME sufferer is offered CBT, GET, mind altering drugs and nothing else. What they WANT is the same right Reeves took for granted -appropriate treatment. As for CBT, after years of practice in coping alone, most already know what is happening and what to expect; the offer of the mind bending services by "therapists" who don't know their ME from their jackboots, is both ludicrous and offensive. My message to Reeves would be: "Spare us!" He demeans people who suffer a severe, painful and incurable neurological disease so what sympathy can he expect for an injury that will heal in a few months?"

Regarding: ³When illness is mostly in the mind² by Clare Wilson. New Scientist, 11 March, 2009.

Chronic Fatigue Syndrome (CFS) covers a number of conditions under a one-size-fits-all title. In particular, it is used in an effort to make Myalgic Encephalomyelitis (ME) disappear in a puff of smoke. Many others who have received a CFS diagnosis, were later found to be suffering from cancer or heart disease or multiple sclerosis, or thyroid deficiency,etc.

Misdiagnoses and incorrect treatments thereof, make up a large proportion of the preventable medical error statistics which according to the BMJ and JAMA, result in one third of all disabilities, diseases and deaths. No one is immune from the dangers of preventable medical error.

It is therefore hardly surprising that the ME community have concerns about Professor Wessely¹s opinions. Despite his personal claims, letters after the name, do not an expert make.

Professor Wessely stated that hate mail goes with the territory but I would ask Ms Wilson to tell us where in medical history public protests have been made about any member of the medical establishment as has been the case with Wessely? Who else in the profession has been as publicly reviled as he?

There has to be a reason and if Ms Wilson had bothered to scratch the surface, she might have had a story worthy of going to print.

"A new explanation was obviously called for, and without a by-your-leave, the typical successful career woman from the middle classes was scrapped in favour of a poorly educated person from a low socioeconomic background. Well….why not? If the label CFS is pinned to those presented as disenfranchised and vulnerable, who in authority, is going to argue?

CFS is not a diagnosis — it is an opinion. Those who promote it, create confusion with the clear intention of setting one group against another. Having created the mayhem, they sit back, feet up on the desk, hands behind the head, sucking on a fat corporate cigar while smugly saying, “Well….after all, what can you expect from hysterical people?”

Their arrogance and their confidence in themselves to manipulate the system reached the point some years ago where an attempt was made by stealth and deceit, to alter the WHO’s International Classification of Diseases (ICD) which lists ME as a neurological condition. To the lay person, this might seem like a criminal act but no one has ever been held accountable for this and other actions — a clear indication of the enormous wealth and power of the puppeteers who are pulling the strings behind the scenes.

Many of those who suffer Myalgic Encephalomyelitis (ME) are rightly adamant that whatever the above self-styled “experts” say, this condition bears no relationship to the group of psychiatric disorders that fall under the umbrella title of the politically contrived CFS."

"Similarly, the guidelines for the management of Myalgic Encephalomyelitis (ME) as decided by NICE are concerned with politics, not reality. That NICE has the support of the medical profession in general, the Judiciary, and certain members of parliament and the House of Lords, including Baroness Thornton, speaks for itself.

One would have hoped the authorities at this level would take responsible action; would lift the edges of the carpet to see what is hidden underneath; would be concerned about the reasons for the contention.

Instead, and as the Baroness has ably demonstrated, there are many in authority who have no experience or knowledge of ME; who do not have the intellectual acumen or who simply cannot be bothered to seek the answers. Adding to the dangers for those who suffer the condition, are the conflicts of interest amongst the law makers.

The following comments made by Baroness Thornton need special mention.

QUOTE:“It goes so far as to say that healthcare professionals should recognise that the person with CFS/ME is in charge of the aims of the treatment programme.”

COMMENT:The Baroness is no doubt skilled in many areas, but expertise in the intricacies of entertaining does not offer experience is THIS field. Her statement is so out of touch it would be laughable if it were not so tragic."

But where does all this leave those who suffer ME, GWS and other “poorly understood” conditions? We live in an environment of secrecy; of a public being misled; of blatant lies and criminal behaviour covered up with the approval of governments. Where does the buck stop? Who are the people who are making fortunes out of contrived diseases?

It is not hard to understand why Claire Wilson was chosen to interview Simon Wessely for the New Scientist recently — it certainly cannot have been for her journalistic abilities. At least 㻣.9% of us were brought up to respect the medical profession. The letters after the name were enough to ensure the figurative bowing and scraping that was demanded no matter how incompetent or how lacking some were as doctors and human beings.

A medical career afforded and affords sadists the opportunity to abuse their powers and no matter how gross their behaviour, the support has rarely been for the victim — the patient. How ever illogical and unintelligent the doctor; how ever flawed his diagnosis and treatment, he was never questioned. He did as he pleased and was accountable to no one. If a doctor said it, then it must be so and his word was law.

Then along came Simon Wessely. Where in history has a western doctor engendered such public anger and dislike as has he and by extension, his followers? There has to be a reason yet journalist, Claire Wilson, who interviewed Wessely on behalf of the New Scientist, did not challenge his contention that the hate mail he CLAIMS to receive, goes with the territory. Such public abhorrence does not go with the territory and never has. It seems the editor of the New Scientist has his own place in the ranks of the puppet brigade.

The ME community in the UK was particularly hard hit when the Countess of Mar, long time champion of the cause in the House of Lords, switched sides. The organizers of the recent conference in the US talked of exciting progress with a diagnostic test just around the next corner. All were encouraged to make a donation to the planned research.

When it became apparent that CBT was included in these “exciting” developments with what appeared to be an endorsement from Nancy Klimas, I put my papers away. Too many puppets…too many puppeteers.

The subject of Dr. Rosamind Vallings¹ recent award has been in the headlines lately and no doubt she has helped many suffering from chronic fatigue or chronic fatigue syndrome as found in mental disorders.

Her own preference for the use of the terms CFS and 'encephalopathy' suggests that this is so. Myalgic encephalomyelitis, categorized by the WHO as a neurological disease, is another matter entirely.

In the UK since the mid to late 1980s, the title of the condition went from ME to CFS to CF to CFS/ME and ME/CFS. No wonder people are confused. In this instance, confusion serves those who create it and the pharmaceutical industry well.

To say: 'I suffer ME - not CFS!' is difficult when relying upon the signature of an antagonistic doctor for the very right to exist. But unless we do, we will continue to suffer and die in this hell on earth that has quite deliberately, been created for us.

Those who favour CFS/ME or ME/CFS seem to be under the impression that Myalgic Encephalomyelitis sufferers will be delighted to accept this compromise. But we have already lived with that particular compromise for some years and we are still 'kindly' being told that this choice describesthe disease the best.

For goodness sake! This is a serious matter. It is not a child's game! We do not live with Alice in her Wonderland. We live in the real world where the name of a disease influences impressionable members of the medical profession to the point where their prejudices turn to outright abuses.

Having seen and experienced the disastrous effect CFS had and has upon our lives, we now hear that certain experts in the States have taken up the good fight for a "fair name". No wonder outsiders are often confused! The cool, calm and kindly manner of the "experts" is at odds with the patients' very apparent anger.

Remember the wording used in the recruitment of “therapists” to administer CBT/GET at the CFS/ME clinics around the UK, and know that the main (figurative) requirement was a stout pair of jack-boots.

Conspiracy “theory”? The denials, rejections and silences surrounding the results of genuine research into the physical causes and effects of ME, are not theories. They are fact and without doubt, conspiracies.

I refer to the Fair Name Campaign Update - Exciting New Direction, written by Rich Carson. I would like to pass a couple of short comments. When this Fair name campaign first raised its head, the manner in which it did so, left me thinking, "They're trying to tell grandma how to suck eggs!"

Here were a bunch of strangers telling people who have endured ME for years - even decades - what to do and how to do it. Today, 21 May 2008, they are still pushing that same barrow - a very similar barrow to the one that Wessely and others (in the UK) have been pushing since the 1980s. We know the moves; we know the tactics. We could give Rich lessons if he wants.... After thinking for awhile, I managed to get off my bed and onto the motorized wheelchair without which, I go nowhere - even in the house - and I headed for my computer.

This update, reminded me of James Jones (if I remember the name correctly) who is a colleague of Rich and Cort. Readers might recall that Jones entertained us with his version of the definitions of sickness, illness and disease. He maintained that people can be sick and ill at the same time, but not diseased. On the other hand, they can be diseased and ill, but not sick! Yet again they can...

Mr. Jones was clearly excited about this topic and went on at considerable length with many convoluted explanations. The feeling I got was that he desperately WANTED to say something, but really he had nothing relevant to say! What a shame! How very sad! If he had just given it some thought, he would have realized that there are none so diseased as those who suffer a terminal illness; a point I raised at the time.

It was clear to me these people had an agenda which has nothing to do with fairness for the sufferers. In fact if they ARE speaking about an actual disease, that disease is not ME. What makes me so sure of that, is something Rich said. Quote:

"First, and most importantly, the patient community has jumped on board. Your feedback has been positive and encouraging."

Say honey chil'! Haven't yo' been readin' letters on the internet lately? Seems to me no one was jumpin' about anywhere! There sure as heck weren't no GET goin' on in ma neck of the woods. Even ma wheelchair won't do no wheelies no mo'.

Seriously, folks, I am sure Rich et al. don't really think we are a bunch of numbskulls to be manipulated and treated with contempt. I feel sure their hearts are in the right places and probably have some disorder or other in mind. But it is NOT ME and before they go any further, they really need to get the basics right; sort out their illnesses, sicknesses and diseases and then start afresh towards wherever they thought they were heading in the first place. Who knows....Alice might give them a guided tour of the rabbit hole!

Some time ago, erikmoldwarrior posted a quotation which I think is relevant at this time. I have copied it out below and thank Erik for drawing it to our attention:

"A nation can survive its fools, and even the ambitious. But it cannot survive treason from within.

An enemy at the gate is less formidable, for he is known and he carries his banner openly.

But the traitor moves among those within the gate freely, his sly whispers rustling through all the alleys, heard in the very halls of government itself.

For the traitor appears [as] not [a] traitor - he speaks in the accents familiar to his victims; and he wears their face and their garments, and he appeals to the baseness that lies deep in the hears of all men.

He rots the soul of a nation - he works secretly and unknown in the night to undermine the pillars of a city - he infects the body politic so that it can no longer resist. A murderer is less to be feared. "

Cicero, Roman philosopher and statesman, 42 BC

To put it another way: With friends like these, who needs enemies? (Author unknown.)

'It is clear to those who follow developments that the dangers of iatrogenic disease, disability and death have reached the point where medical treatment is now the leading cause of suffering due to health issues. Many books have been written on the subject and patient concerns are constantly ridiculed by the medical profession and those influenced by it, as we see in ME. Time and again, history shows that decades after various concerns were first aired by the lay community, the medical profession issues a statement: "It has been discovered that.."

The advice we have been given and the pills we have swallowed, have resulted in epidemics in obesity, diabetes, cardiac disease, eating disorders and psychiatric conditions to name but a few. If you become an in-patient in hospital, the chances are that you will take an unwelcome guest home with you - an untreatable super bug.

In short, the medical profession and psychiatry in particular, are manufacturing their own business to the financial advantage of themselves, the pharmaceutical industry and hangers on. The disadvantaged are the sick, the dying and their families.'

'It was indeed kind of Dr. Manu to take the trouble to favour us with a copy of his C.V. Having looked through this extensive list, I was left wondering why I did not feel impressed.

Perhaps it is because many who have high IQs in certain areas, barely rank as idiots in others. Perhaps it is simply that, according to hospital records, the medical profession is the third biggest killer and cause of disease after cancer and cardiac conditions. Or going a step further, maybe it is because some researchers take into account the whole of society rather than just hospitals records, and lean towards the view that preventable medical error outranks ALL other causes of death and disease.

Dr. Manu's note that preceded his CV and explained his views on ME, left me wondering what qualified him to pass an opinion at all. Not that he actually referred to ME. He prefers the title, chronic fatigue syndrome ( CFS) - a condition, concocted by self-serving members of his profession and a condition which bears no resemblance to Myalgic Encephalomyelitis (ME).

His attempt to persuade his readers of his neutrality, had the exact opposite effect. Ill informed comments such as: "..there is no proof that CFS, as currently defined, is a physical or psychiatric disease" must have raised many hackles. This issue is not about a concocted disorder, the definition of which is determined by conflicts of interest and nothing else. It is about a scientifically proven, and a WHO accepted physical disease that is both life-destroying and life-taking. Dr. Manu's statement is blatantly untrue and he can hardly be surprised at being criticized for it.'

'Health is supposed to be the medical profession's business. Reason tells us that whatever is called for, be it drugs, acupuncture, herbs, supplements etc. the medical profession should be able to respond. Yet the statistics leave us in no doubt that instead of curing us, they are either killing us off, making us seriously ill or not making any difference at all.'

'What life saving strategies do the clinics have? How do the Clinics deal with heart failure or any organ failure for that matter? How many will die of such failures, or cancers or despair -induced suicides while undergoing a course of Cognitive Behavioural Therapy and psychotropic drugs? In whom should we have faith?

"Seize this opportunity," Ms. Adcock urges. What opportunity? From my hospital-type bed and motorized wheel chair, I don't see the new clinics presenting any opportunity at all.

Rather than castigate a group of seriously ill people for being "shrill" and "hysterical", it would have been more appropriate if Ms. Adcock had praised them for their courage.'

'At one time, sick people recuperated or convalesced. Now according to a group of megalomaniacal brain-washers and self-elected "law-makers", they are expected to rehabilitate along with murderers, rapists and thieves.

Logically a sick person has to recover from his disease before he can "rehabilitate", but the above mentioned gang have promoted the concept that certain illnesses are crimes. Commonly, the "offender" is sentenced to and must engage in, graded exercise, and adapt his thoughts and actions according to the dictates of CBT. If he cannot or will not do this, it is quite likely that the police will come to break down his front door so the men in white coats can take him away by force if necessary.

The law which states that a person can only be sectioned if he is a danger to himself and/or others, has been swept aside by the above mentioned self-serving monsters masquerading as doctors.

Many will dismiss this as fanciful rubbish. After all, we live in civilized societies where such things could never happen. Unfortunately, they can and they do.

'The thing that confused me the most when I was first catapulted into this nightmare we refer to as ME, was the inconsistencies. That I was expected to swallow every crazy explanation the "experts" came up with left me wondering if I really WAS mad.

The recent CDC report of their study into genetic mutations in ME brought this to mind rather forcefully. In the UK, the Wessely "school" claim that the typical ME sufferer comes from the lower socio-economic classes while in the US the CDC now say the genetic study shows that the hysterical, upper class professional, white woman model of ME, was after all, not correct. No apology has been issued but then it never is.

Which ever you look at it, both models were designed for the same purpose. They are manipulative, pathetic and transparent attempts to maintain control - to absolve the authorities and society in general of all responsibilities. But how stupid. How arrogant.'

'If science is to follow this line of inquiry, then let it be honest with realistic terms of reference. As it stands, it could well be another route to the psychiatric dustbin. In fact, with the endorsement of people like Simon Wessely, it is a certainty.'

'The inability to read and understand scientific literature has been demonstrated repeatedly by those who push the mental disorder barrow, and while I do not suggest that you have conflicts of interest, your presentation does demonstrate the same lack of intellectual acumen which plagues all who do.'

'Plagues of the bacterial and viral variety are spread by parasites that feed on infected vermin. Where chemicals are concerned, the vermin and parasites are no less real than the fleas and rats that dispensed the bubonic plague. The only difference is that fleas and rats do not and cannot consciously make a choice to destroy. The parasites and vermin associated with the Chemical Plague, can and do.'

Simon holds a consultancy position not only within the UK MoD, but also within the US equivalent. Both organizations have a vested interest in covering up the facts about GWS. Waffling on about the medical triumphs of the Gulf Wars and the absence of infectious diseases amongst the veterans is a diversionary strategy.

With the production of more and more psychiatric drugs, each supposedly better than the last, mental disorders should now only be found in the history books. But they are not. Far from it. We now have an epidemic of psychiatric illnesses such as we have never seen before.

And what about ME? What about the Gulf War Syndrome? Given that the mountain of evidence pointing to these being organic diseases is ignored, and given that the victims of them are swept under the psychiatric carpet to be stomped on, you do not need to be a rocket scientist to realize that there is a massive cover-up afoot.

It boils down to the fact that, despite the billions thrown at research every year, medical science has barely scratched the surface of disease. So who benefits from those billions?

Schaefe: Children in America are being medicated to death—death by mind-altering drugs. [They] are coerced into mental health screening, they are forced into psychiatric treatment and they are prescribed dangerous psychotropic drugs. America's children are oftentimes denied contact with their parents, they are restrained without parental knowledge and they are given many different psychiatric medications. [End of quote.]

This is not just a matter of classroom behaviour. We also see it, for example, in our own international ME communities.

"[Psychiatry] is a field where fads and fancies flourish. Hardly a year passes without some new claim, [But]The early promises of each of these discoveries are uniformly unfulfilled." (US) Joint Commission on Mental Illness and Mental Health, 1961

What is it was about the medical profession and psychiatry in particular, that attracts the sort of person who will deliberately put a seriously ill child into a swimming pool and stand watching as he drowns. The expert who knew best, who would brook no argument, and who insisted the childs weakness would disappear once he ran out of breath, was wrong. Had the boy fully clothed mother not jumped in to save him, he would have drowned

[Response to Wessely on Co-cure I would like to thank Professor Simon Wessely for his interest in my piece entitled "What is it About Psychiatry?". It is heart warming to note that, as Director of King's Centre for Military Health Research, he is taking such a keen interest in children with ME.

However, I feel I must point out that the title he gave his response ("Libelling Paediatricians"), is misleading. According to the Collins Concise Dictionary, libel means "the publication of defamatory matter" and it can only be defamatory if it is not true.

From the entire article, the professor was only moved to comment on the reference to a child suffering ME being placed in a swimming pool where he very nearly drowned. It was but a small section and the rest (99% referenced) spelt out quite a number of psychiatric horrors which the professor presumably thought were perfectly in order since he chose not to comment.

As for the "let 'em sink or swim" strategy, I am puzzled as to what made the professor think I was referring to the child in the Isle of Man. The "therapy" is not unique to that one case as I am sure he is aware. ]

The job description for Trainee Clinical Fatigue Therapists in some of the new network of 12 Fatigue Clinics across England, was the last straw. While the language used was not unexpected, to see it in black and white was nevertheless a body blow to those who suffer Myalgic ncephalomyelitis as defined by the WHO, for it is at them that the proposed "services" are aimed.

"'You've got the fox in charge of the henhouse," DeAngelis said in an interview. 'The pharmaceutical industry spent $4.9 million in 2003 to lobby the FDA. That's like saying, I'm going to lobby the police department to keep cousin Guido from getting arrested for bootlegging.'" (Philadelphia Inquirer, 23 Nov. 2004)

In the interests of keeping ourselves safe from medical harm, and as citizens of democratic countries, it is up to each of us to resist tactics such as those mentioned above, and to do whatever we can individually towards bringing ethics back to medicine and in particular, the principle of "first do no harm".

He [Simon Wessely] claimed to have had 53 conflicts of interest during the course of his career and exhorted all to accept that this was now the way of the world. “It is time we all grew up,” he said. “Everyone has conflicts. Everyone has agendas. Everything affects patient care. Our own personal prejudices, likes and dislikes….”

Anne Foxey, Nutrition Specialist, had a much better handle on the subject. Her rapid response stated: “The only free lunch is the cheese in the mousetrap.”

The current Inquiry by the UK House of Commons Health Select Committee into the Influence of the Pharmaceutical Industry, is an indication that the sort of attitude demonstrated by Simon, is causing considerable concern not only amongst those who have suffered the effects, but also in certain official quarters.

Margaret Williams’ excellent piece regarding the inquiry, highlighted how much is at stake. “Some people were earning considerably more from individual pharmaceutical companies by talking for them every fortnight, twice a month, than they were earning from the university or the NHS that they work for,” saidDr. Wilmshurst in his testimony.

Due to poor health, I have to be selective about the issues I follow. When PACE raised its head, I put it on the back burner for two reasons. First, if pacing is to be studied in conjunction with CBT and GET, then it is simply more of the same psychiatric regurgitation we have become so used to. On the other hand, it is a waste of time and money to study pacing on its own as a coping strategy, for there IS only one expert in this regard and that is the patient. Whether he suffers ME, cancer, heart disease, Motor Neurone or any other physical ailment, it is not for others, however well qualified, to dictate how much activity that person can and should pursue.

Nonetheless, I am aware that PACE has become a very controversial subject so when I saw Ellen Goudsmit’s piece entitled “Misunderstandings re PACE”, I read it.

I would like to comment on some of the issues raised by Ms Goudsmit as being matters of general concern in regard to many aspects of ME.

In the UK, 1988 also saw a change to the title, MEitis. The psychiatric drive to this end had succeeded and the disease was re-named the chronic fatigue syndrome (CFS). Sufferers quickly learnt that this was an attempt to trivialize them and their suffering, and to label the condition a mental disorder.

After many years of protest, the authorities reluctantly conceded that ground must be given. From then on, the disease was to be known as CFS/ME, but from the perspective of the psychiatric lobby, this presented a problem. While MEitis has been listed as a neurological disease by the WHO International Classification of Diseases for almost 50 years, an underhanded attempt was made to include it under mental disorders as well. Professor Simon Wessely failed to achieve this objective so now the pressure is on to delete MEitis from the official records altogether.

"Patient welfare respected"? Now there's a novel idea and not one that is experienced by many GWS/I or ME sufferers. Perhaps that is because many are too ill to demand respect - they being bed bound, wheelchair bound and/or housebound often from the onset of their illnesses. AIDS victims, on the other hand, are rarely debilitated until the latter stages of the disease. They can make their physical presence felt.

Wessely's behaviour and tactics - such as the recommendation that nothing more than routine tests be carried out - suggest very strongly that he does not want to find himself in Gallo's position. Good heavens! Those darn activists might actually find the causes and the cures!

"Academic psychiatry has all but lost contact with the population it is supposed to serve..Criticism is, if not actively discouraged, then politely but very firmly ignored." N. McLaren, M.D. Psychiatrist, Australia, 1999

In the face of undeniable evidence to the contrary, X never admits to being wrong. In his (or her) mind, he is omnipotent. As a self perceived superior being, he demonstrates contempt towards others who he has neither met nor spoken to. He attacks their characters and personalities and makes no secret of his displeasure if his judgment is questioned.

The [psychiatric] Diagnostic Manual no doubt lists a condition or two under "Personality Disorders" that match the behaviour, but what happens when people in positions of power, such as politicians and medical diagnosticians, fit the description? What happens to society when the same politicians and diagnosticians receive pecuniary and other rewards for manufacturing mental disorders where none exist?

Your business is supposed to be health, but only on your terms - irrespective of whether or not those terms are in the patient's best interests. If someone does not respond or cannot tolerate your methods, tough! Correct me if my memory has let me down, but last time I looked, I believe The Health and Disability Commission's Act stated that the patient should be given all the options and allowed to make the choice if that is his or her wish.

Instead of the balanced individual of at least average intelligence who I believed myself to be, I have been deemed to be a pathetic, snivelling, neurotic, lazy, lying, devious, unintelligent person of poor character just waiting - even as I deny the need - to be taught how to think and behave; how much and when to exercise; and to swallow the psychiatric drugs the "therapist" is itching to put into my mouth.

The trouble is, the people who make these judgements, are strangers. I have never met them. I have never seen them. I have never spoken to them on the telephone. For all I know, they could be a bunch of modern day Jack the Rippers.

I take these judgements very personally. Just who, I have wondered, are these clairvoyants masquerading as psychiatrists?

"Who will protect the children?" is an apt title and as I watched the video, I thought of Gordon Thomas' book "Journey Into Madness - Medical Torture and the Mind Controllers" in which he said:

"Nothing I had researched before could have prepared me for the dark reality of doctors who set out deliberately to destroy minds and bodies they were trained to heal."

It occurred to me (as it has done on other occasions) that some of the doctors referred to by both of the speakers on the video, are not so very different from the subjects in Thomas' book. The cold, hard deliberateness with which the extensive scientific evidence of the physical nature of ME is routinely dismissed or ignored, goes beyond abuse. It speaks of an agenda that is not concerned with patient welfare.

While families agonise helplessly over the suffering they are forced to witness, the sufferers themselves have to deal with the cruel physical and mental consequences of inappropriate attitudes and treatments for psychiatric disorders that did not and do not exist. It is hard enough for sick adults to protect themselves against misdiagnoses and mistreatments, but this video highlighted that where children are concerned, some are even denied parental protection.

I chose the best of a bad lot. His name should have been a warning, it being closely related to "Quack".

My second visit saw me sitting before the great man sweating, visibly shaking, trying not to scratch my skin off in an effort to relieve the itch...and, well you know the scenario. I asked for some sick leave from work. He frowned and said in a stern, angry voice, "You don't need time off work! You need pills for your emotions!"

If I had been contagious, I would have flung my arms around his neck, wept and wailed, breathed all over him and wiped my nose all over his shirt and tie...

The Birth of The Bounty Hunters. In her book "Benzo Junkie", Beatrice Faust tells how one of the fears she used to experience, was sustaining some sort of injury that would leave her brain damaged. In the benzodiazepine experience, she said, the thing she feared most, had happened. It happened to me as well.

The story is fiction based on fact. It takes place in New Zealand in the years 2002 and 2003, and concerns a pharmaceutical company which manufactures a range of drugs that cause serious physical and mental illnesses. To suppress complaints about the serious adverse reactions and give the company a financial edge in the market, political co-operation has been bought from three high ranking members of parliament.

(See below for further information and puchasing details for 'The Bounty Hunters')

In 1988, the Committee on Safety of Medicines in the UK warned against prescribing benzodiazepines for more than four weeks, yet a Panorama documentary shown on BBC television in May 2001, found that some patients for whom the drugs were first prescribed after that date, have been kept on them for ten years and more. With its population of 50.4 million, 17.5 million prescriptions are still issued annually in the UK. 1.5 million patients are still on long-term prescriptions. (Official 1999 figures).

The specific effect of BZDs is upon the central nervous system which makes them mind altering. A normally cheerful, outgoing person can become a cringing, fearful individual, or a surly, violent one. Cognitive functions and intellect are frequently impaired and the toxic nature of the chemical, has the potential to cause lasting damage. Where the adverse effects and addiction had been misdiagnosed as a psychiatric disorder, more mind altering drugs were prescribed and some of those unfortunates, were admitted to mental institutions where electric shock treatment was administered in some cases.

Gurli's book

The story is fiction based on fact. It takes place in New Zealand in the years 2002 and 2003, and concerns a pharmaceutical company which manufactures a range of drugs that cause serious physical and mental illnesses. To suppress complaints about the serious adverse reactions and give the company a financial edge in the market, political co-operation has been bought from three high ranking members of parliament.

The matter is brought to the attention of an investigative journalist, John Harmon, after the suicide of a woman who had taken the latest and still experimental drug, bendiazide. Harmon finds that the prescribing doctor, Brian Jackson, is particularly active in the testing field. He works for a number of companies who pay him $2000 for each patient upon whom he tests their drugs, earning him in the vicinity of $500,000 per annum. In exchange, he supplies the manufacturing companies with glowing reports which ensure approval for the marketing of the substances in question.

Copies of 'The Bounty Hunters' are available in e-book format for just $4.95. Click on the link above for purchasing details.Hard copies of the book 'The Bounty Hunters' can also be obtained, email for details.